The Child and Family Health Lab conducts research that considers the important role of social ecological (e.g., family, culture, healthcare system) and developmental factors when an individual has a chronic medical illness or disability. This includes examining the effects of an illness or disability on other members of the family (e.g., parents / caregivers and siblings) and understanding how the family and cultural context influences the management or clinical presentation of the illness or disability across the lifespan. Below, please find descriptions of several of our current research projects.
Improving Chronic Disease Outcomes Across the Lifespan by Addressing Structural Racism (WE CARE Primary Care)
Currently Enrolling patients (or parents/caregivers of pediatric patients) who identify as Black, Latino/a/x, or Middle Eastern / North African (MENA) and speak Spanish, Portuguese, Arabic, or English.
- Benedict Family Medicine
- Hahnemann Family Health Center
- Family Health Center of Worcester
- Edward M. Kennedy Community Health Center
Despite medical and scientific advancements, racial/ethnic health inequities continue to increase in the United States. Racial/ethnic health inequities are driven by structural racism, which includes societal, institutional, and organizational structures and policies. Structural racism can lead to environments where marginalized racial/ethnic communities experience more negative social determinants of health (SDOH). Medical professional organizations and insurers recommend screening for adverse SDOH at healthcare visits. However, we currently know little about (1) families’ perspectives regarding how racism and discrimination relate to addressing adverse SDOH and unmet needs and (2) how to equitably implement SDOH screening and referral systems without reinforcing bias, racism, and stigma for people of color in the healthcare and social service sectors.
Families FORWARD: Developing a New Program as Families Look Ahead to Adulthood (Autism)
The transition to adulthood is a critical developmental period that sets up trajectories of adult functioning. For youth on the autism spectrum, this transition has been described as “falling off a cliff” due to the lack of available adult services and families feeling overwhelmed and unsupported. Although the transition to adulthood is universally challenging for families, it is also a time of increasing race/ethnicity-based service use disparities. Current services often do not account for cultural differences in goals and preferences for adulthood. The proposed project takes a community-based approach to developing a new transition planning program for families of youth on the autism spectrum. Families FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD) is an individualized transition planning program that is being developed with the input of service providers and families who represent a range of perspectives across cultural backgrounds and autism-related experiences. The ultimate goal of this line of research is to improve transition planning and decrease service use disparities across the transition to adulthood for youth on the autism spectrum and their families. For more information about this study, please visit our study page.
Analysis in Progress
Improving Service Quality for Latinos with Intellectual/Developmental Disabilities & Their Families
New research study for service providers and Latino caregivers of youth (ages 5-17) with disabilities such as autism, Down syndrome, and epilepsy!
Our research team at Boston University wants to learn about your experiences with medical, psychological, developmental and/or family support services for Latino youth with intellectual/developmental disabilities. Your participation would include one study appointment (over Zoom or a phone call) that would last approximately 1.5 to 2 hours long. Appointments would consist of:
- An interview with a research team member (60-75 minutes) on your previous experiences with services and feedback on how to improve services for Latino youth with disabilities and their families.
- Additional online questionnaires (30-45 minutes) on your demographic information, your wellbeing, and your environment (e.g., family or work environment)
If you are a service provider or Latino caregiver interested in learning more about this study, please visit our study page.
Creating a New Sibling Program (Cancer):
SibACCESS (Acceptance, Coping, Communication, Engagement, and Social Support)
A childhood cancer diagnosis can have significant effects on the entire family system, including siblings of the children with cancer. Siblings needs are often let unmet under the stress of pediatric cancer treatment. The purpose of this study is to hear the thoughts of what parents, siblings, and providers would like to see included in a sibling-programming. We want to hear about their program recommendations for sibling-focused content, formatting, timing of services, feasibility for sibling engagement, cultural sensitivity. For more information about this study, please visit our study page.
Understanding and Addressing Social Determinants of Health in Pediatric Sickle Cell Disease
Many youth with sickle cell anemia live in impoverished households in which parents often face difficulties related to social determinants of health (SDOH), such as food or housing insecurity. Yet, we know little about the mechanisms through which SDOH may affect medical outcomes in these children or about how to adequately address unmet needs related to SDOH. Thus, this mixed-methods study aims to understand how SDOH impacts the ability of low-income families of children and adolescents with sickle cell anemia to manage this life-threatening disease, and apply these findings to adapt and implement a SDOH screening and referral system in order to promote health equity in this often under served population. Please email us for more information.
Understanding Siblings’ Involvement in Cancer Treatment
How siblings are involved in cancer treatment may influence their adjustment to cancer-related stressors. To date, no research has documented the variable ways in which siblings are involved in cancer treatment, or the potential relationship between siblings’ treatment involvement and psychosocial functioning. We are conducting a study to better understand siblings’ experiences with cancer treatment, and if siblings’ experiences with cancer treatment may influence how they feel emotionally. For example, we want to hear about siblings’ experiences going to the hospital or clinic, learning about cancer, and spending time with their brother or sister who is sick. There are lots of different ways that siblings might be involved with supporting their brother or sister during cancer treatment – some may be involved a lot, and others may be involved very little or not at all. This study will help us understand all the different ways that siblings are involved in treatment so that we can develop a measure to assess siblings’ involvement. For more information about this study, please visit our study page.
Siblings FORWARD: Developing a Program to Engage Adult Siblings in Planning for the Future with their Family Member on the Autism Spectrum
There is a growing population of individuals on the autism spectrum who are aging into adulthood, and the current service delivery system is not equipped to meet their needs. Unmet needs are even greater for those who identify as racial or ethnic minorities. The responsibility of coordinating care frequently falls on family members. Although siblings often provide support to their family member on the autism spectrum when parents are no longer able to do so (e.g., due to illness or death), siblings are seldom involved in autism-related research or support services. This study addresses this gap by developing a family-based program to engage siblings of adults on the autism spectrum in future planning before the crisis of a caregiving transition. Siblings FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD) is a community-based, individualized telehealth program that targets common barriers to sibling involvement in family future planning. It is being developed in collaboration with English- and Spanish-speaking families of adults on the autism spectrum and their service providers. For more information about this study, please visit our study’s site.
Creating a Blueprint for Sibling Services (Cancer)
Siblings of children with cancer have increased psychosocial risk (Long et al., 2018). Although sibling psychosocial care is a standard of care in pediatric oncology (Gerhardt et al., 2015), the Sibling Standard is among those least likely to be implemented (Scialla et al., 2018; Jones et al., 2018). We are conducting a study to better understand the landscape of psychosocial services for siblings of children with cancer. This includes characterizing current screening and intervention practices, querying perceived barriers and facilitators of sibling psychosocial support, and delineating methods to overcome implementation barriers. Together, this project will culminate in the creation of a blueprint for sibling services. Characterization of the depth, breadth, and barriers to sibling psychosocial care will help us to identify targetable service gaps, inform dissemination of successful sibling programs, and ensure wider-spread implementation of the Sibling Standard. Improving sibling support will strengthen family-centered care and foster healthier trajectories of siblings’ psychosocial functioning across the lifespan.
Identifying the Implications of False Positive Autism Screening
In 2016, the US Preventative Services Task Force (USPSTF) concluded that there is insufficient evidence to support universal screening for autism spectrum(ASD) in primary care. For example, there is a lack of information about the impact of false positive screening outcomes on families, as well as how sociodemographic characteristics are related to families’ engagement and experiences with the screening, diagnosis, and treatment process. Thus, this project is investigating the potential benefits (e.g. frequency of alternate diagnoses, access to services) and harms (e.g. parental distress) in families of children who initially screened positively for autism but who did not receive an autism diagnosis after a full diagnostic evaluation.
Considering the Cultural and Family Context of Autism in Childhood
Cultural factors are related to families’ experiences related to autism diagnosis, treatment involvement, and day-to-day functioning. For example, racial/ethnic minority children are diagnosed with autism later than non-Latino white children and often receive fewer or lower-quality treatments, but the reasons for these observed disparities are not fully understood. There is also data to suggest to cultural factors may influence how other family members (e.g., siblings and parents) respond to the unique needs of having a child/sibling with autism. Thus, this line of research aims to better understand the cultural and family context around having a young child with autism. Findings are expected to inform culturally-sensitive approaches to working with socio-culturally diverse children on the autism spectrum and their families.
Understanding Mechanisms of Disparities over the Transition to Adulthood among Youth on the Autism Spectrum
Race-, ethnicity-, and income-based disparities have been documented among youth on the autism spectrum who are transitioning to adulthood (Eilenberg et al., in press). Low-income and racial/ethnic minority youth on the autism spectrum are less likely to participate in transition planning meetings and to engage in post-secondary education, employment, or social activities than their White and higher income peers on the autism spectrum. However, mechanisms underlying these disparities have received little research attention. This project aims to better understand the factors that contribute to these disparities.
Developing a Screening Module for Siblings of Children with Cancer
As an important but frequently overlooked part of family-centered care, siblings of children with cancer are affected by cancer-related stressors. Siblings are at-risk for acute and long-term psychosocial difficulties, such as elevated posttraumatic stress and disruptions in school, family, and social functioning. Many siblings also show resilience in the face of cancer. Despite this variability in sibling adjustment, there are no empirically validated screeners for sibling distress. Thus, we have recently developed English and Spanish versions of a screening module for early identification of siblings who are at elevated risk for psychosocial difficulties. We are currently collecting data to validate the screener and identify ways to incorporate it into clinical care.
Examining Sleep Quality and Patterns in Children with Cancer
Children with cancer frequently report sleep disturbances during and after active treatment, and these disturbances may negatively affect their own and their family members’ emotional and neurocognitive functioning and quality of life. The identification of modifiable influences on children’s sleep in the context of childhood cancer may inform clinical recommendations. This mixed-methods study is investigating sleep disturbances in children with cancer, as well as sleep hygiene and parental behaviors related to their children’s sleep at each stage of cancer treatment (active treatment, maintenance therapy, and off-treatment).
Interested in learning more?
If you are interested in hearing more about our research studies, please email firstname.lastname@example.org.